Role of the NGO sector in supporting the families with children with

developmental needs International conference

"Innovative approaches to working with disabled children and their families:

Kyrgyzstan and international experience" 1-3 March, Bishkek - Kyrgyzstan

Dr.Vasilka Dimoska

Republic centre for support of persons with intellectual disability-PORAKA

Republic of Macedonia

First information about disability

For the parents of the new born child the first information brings mixed feelings:

• Sadness, shock,anger • Responsibility, prejudices, fear of isolation

To find the most sophisticate way

how to inform parents about the condition

of the new born child is one of the

most important task for the doctors

and other professionals

Important approach

• Mutual trust between parents and professionals must be established!!!• Acceptance of the facts for the abilities and disabilities of the child • Support by the family, friends and family doctor• Appropriate support and care, education, and management of the needs of child

Situation of the families

Parents faced with:• Limited access in the society

and cut-off from the social opportunities

• Incapability to make contribution in the socio-economic development of the family either to their society

• Lack of opportunities and inability to make choices

Parent’s movement

• Parent’s associations = join forces

• Focus on the potential and abilities

• Fight for new social justice, benefits of rehabilitation and new scientific overview

• Change of the approach from

the institutional model of care

to the community based services

Planning challenges

• Responsibility of parent to

plan for their children

• Role of the parent’s

associations on the local,

regional and national level

• Planning of the impact on the legal system, system of services and provision of care

Different situations between the countries

Western European Countries Public awareness campaigns Inclusive policies for integration

of persons with disabilities Substantive knowledge about effective actions Improvement of the education system, system of

care and rehabilitation

Central and East EuropeSituation in the Republic of Macedonia

Part of the Former Yugoslavia

(socialistic system of governance) Minimized role of the NGOs Since 1991, transition period Reforms

Reforms and projects in R.Macedonia Republic centre for support of persons with

intellectual disability-PORAKA-

1998 –2000 supported project by PHARE LIEN Program

10 units for the pre-school age children in 10 different communities, training of 20 parents/volunteer for the work in the units

Capacity building of the National organization and local branches

De-institutionalization Creation of alternative

community based services Since 2000, program of Family support in

prevention of institutionalization and creation of alternative community based

services for adults with intellectual disabilityClubs and counseling for the parents5 Day Centers for adolescents and adults Pre-conditions for creation of small group home

Republic center for support of persons with intellectual disability-PORAKA-

National Level• National Council of Organizations of Persons with

Disabilities• National Coordinative Body for the rights of persons with

disabilities in R.Macedonia

International level• Member of Inclusion Europe• Member of Inclusion International• Member of European Association of Service Providers for

Persons with Disabilities (EASPD)

Advancing the Human Rights of People with Intellectual Disability in Civil Society

2000 - 2003

Partner organization

in the ProjectCountry report Support and straighten

the capacity of the

national organization and

local branches

National Awareness Campaign for the Support of Persons

with intellectual disability in R.Macedonia

Headline:Don’t test only your intelligence,

TEST YOUR HUMANITY!!!1. Primary target group:

- public/all citizens

2. Secondary target group:

-Authorities and policy makers

Communication’s aim of the Campaign

Braking prejudice and discriminationBuilding positive image about the needs and

abilities of persons with intellectual disabilityChange of the attitudes and differentiation

between intellectual disability and mental illnessCreation of politics for equalization of the

opportunity of the persons with intellectual disability

Target areas of the Campaign

Income maintenance and social security

Education for all and

possibilities for employment

Health care and rehabilitation

De-institutionalization and provision of alternative community based service

Collaboration and Support

Campaign organized by the Republic center for support of persons with intellectual disability- PORAKA , supported by the Ministry of Labor and Social Policy, Ministry of Education and Science and Ministry of Health

Positive sign Government

become more open for

the collaboration with

the NGO sector

Partnership

For the successful development of the program and successful results the most important step

COLLABORATION and COORDINATION between the governmental bodies/institutions and non-governmental organizations/parents

associations

UN Convention for the rights of persons with disabilities

• Signature Ratification = Obligation

• Instrument for improvement of the rights in all aspects of life